My Routine

"I've got creon,

 creon in my nose,

creon in my toes,

 creon in my hair,

 creon everywhere"

Learning your baby's natural routine or trying to implement your own is difficult, i'd planned to just listen to my baby and follow his lead...but you can't do that when it comes to medicines.

From L-R: Bib, Creon in pot, Syringes with Flucloxacillin 

Having a newborn with Cystic Fibrosis is hard. Antibiotics must be taken on an empty stomach so 2 hours after a feed or 1 hour before. Physio needs to be done morning and evening, but a crying baby wants food not physio. It is especially distressing to give Henry his Flucloxacillin antibiotics as he cries so much and pushes it out of his mouth. We called the nurses who advised to blow on his face fast which makes him swallow (a baby's natural reflex) and squeeze his cheeks. Yesterday was a triumph as he took all of the antibiotics and none dribbled out thanks to me holding his cheeks so his tongue cant push the medicine out.

We give him Flucloxacillin antibiotics with syringes. At first it looked scary to use and its alot of responsibility to make up this antibiotic ourselves as its so important to him and remembering the night before to boil and cool water before making up the medicine for his use next day.

We use Aptamil Formula as I had a truly awful time trying to breast feed, he was hungry all the time, wasn't latching, I got mastitis, tried expressing...all exceptionally stressful for me and the baby so we went onto formula gradually and its been a real saviour to quickly and reliably feed him when he needs it.

Creon, the enzyme that helps his pancreas to absorb his food with the worlds smallest plastic scoop- pretty easy to use and not stressful. Fed to him before each bottle mixed with apple puree.
Aquadeks Vitamins- bright orange liquid vitamins that are more soluble for him
Physio - patting his front and sides to help clear his lungs

6 week old toes 

My Routine (hourly or half hourly differs sometimes)

6.45am Physio

7am Creon, Feed

10am Antibiotics

11am Creon, Feed, Liquid Vitamins

3pm Creon, Feed

6pm Antibiotics

6.45pm Physio

7pm Creon, Feed

11pm Creon, Feed

3am Creon, Feed

Sticking to this is hard, especially as sometimes he wants more or less formula and that then brings forward or back these times.

We had 2 days where this all worked perfectly and then back to square 1 and no routine. At times this routine seems an endless cycle of waking him up when he wants to sleep, feeding late, crying because he wants food or burping or cuddles and then feeling awful when his face is contorted from having to have antibiotics.